Now that my sister has a dx of "Probable lupus with arthritis", we are wondering about several things in retrospect and thought it would be interesting to get a general consensus here to maybe help her sort out some things (i.e., what may or may not be lupus related) and just as a way of learning more about other aspects for comparison (such as #2 & 3, for example).

1. ) What do you think may have been your very first clue(s) that something wasn't right?--

a. Overall stiffening, such as in the morning or after sitting awhile?

b. Random pain in muscles/joints (moving around in a variety of places)?

1. My first clue was severe swelling in my ankles and legs, and I had been getting unexplained skin rashes for years. Later I had random pain moving around in a variety of places and severe memory problems.

2. I was 46 when my nephrologist first suspected lupus but was 48 when I was officially diagnosed.

3. I received a diagnosis very quickly. I went 2 years without an official DX because my biopsy wasn't 100% lupus and I really didn't have any other symptoms. As the symptoms built up I finally went to a rheumy and was given a DX almost immediately.

Hi sister , sorry about your sister , Here's a few of my answers to your questions , Lupus from what I hear from reading is different in everybody , but sure hope I can help ya out a little.

1. Was in hospital for kidneys , was told I had an autoamune diease when I was 20 it was after I had my first baby. Then was hospitalized several time 's in next couple years . Had to go on I V's was really young and stupid never even thought to check on what was wrong with me . Then it just went away . When I was 26 or 27 went back in for kidneys ,and started to devople other problems such as stiff in morning , had to crawl up steps and so on . Stiff after sitting long time , and rash . Doctor had asked me if all that was happening to me , and I was like how did you know . He said I think you have Lupus took bottles I mean a real bottle look like a bottle of blood from me . Like one of those old coke bottles . 2 of them , realesed me and told me I had lupus after about a week . Well stupid me just took motrin everyday for about 5 years and dealt with pain . Didn't have any organ flares , just joints . Went back to Doc about 3 or 4 years ago ,cause the pain and my left eye got really bad , and was told then I also have fibomyalgia. (GREAT NEWS) . So to answer your other question , I still don't have an accurate diagnose . At this very moment I am on steriods for rumatic flare , lympe nodes are all swalllon . Rumey told me yesturday . You never know when your gone to have a flare , you could be working hard , or you could be doing nothing at all . And yes I get epidural shots in back for my leg with cortisone in them . they really help me . Well hope I helped you out some .

1. ) What do you think may have been your very first clue(s) that something wasn't right?--

In a matter of 5 days I went from happy and healthy to swollen, severely sick, serverely swollen, 3 different rashes all of my body, severe arthritis, chest pains, inability to swallow ...I could go on for days... Stiffness...brusing...knots and lumps everywhere,,high fever...

2.) At what age were you diagnosed? I have yet to be officially diagnosed! I started getting sick in Dec 07. It came really fast, really hard, with NO notice.

3.) How long did it take to get a diagnosis?n/a....I am waiting...

4.) Is there a family history...or do you think this may be more of an environmental issue...or neither? Absolutely no family history on either side of my family. Both sides have NO health problems...just psychiatric ;)

5.) For lupus without arthritis: How are the symptoms different? Do you have swelling? Supposedly I do not have arthritis...I have the worst swelling everywhere ..from my throat to my feet. I suspect I do have arthritis though

6.) If with arthritis, are cortisone injections helpful? How often?No idea

7.) How often do flares generally occur? Does something seem to set them off...or do they just seem to happen spontaneously? I have recently figured out everything that causes my flares and taken them out of my life...it takes about 3-4 weeks to start working since your body must totally detox itself. I am now allegic ( never was before 12/07) to tylenol, aspirin, IBprofen, ALL NIGHTSHADE FOODS meaning tomatoes potatoes, eggplant, all legumes including peanuts beans peas chickpeas , red peppers, bell peppers, soy, tobacco. Since I have completely eliminated those items from my life, including chocolate for the most part, my flares have pretty much stopped. I may have a faint rash every now and then but before I had 27 severe symptoms and now I have NO severe symptoms and only a few controlable ones. PLus my Plaquenil and my allergy meds. I take zyrtec , claritin hives and alavert everyday.

8.) Are gastrointestinal problems common (independent of reactions to meds)? Diarrhea? Constipation? Nausea? Yes, yes, yes. Mainly due to meds for me. Except for the nausea...thats a symptom*jenn--#2*</FONT><I>

hi sister, for me it was 1. stiffness after sitting for a while, rash, weight loss, so tired all the time and hair thinning 2. 65. 3. not long because it showed in my lab work and with all my symptoms. 4.no 8.constipation for me most of the time heck I would like to have just a touch of diarrhea LOL sometime.(just kidding)Lupus, RA, OA, Raynard diseases, Hypothyroidism and a Breast cancer survior.

Sandy & Crystal - Each of you started with kidney problems as an initial symptom, right?

Crystal - What kind of eye problem have you had?

SFnative82 (Jenn?) - You had nausea from the very start? Anyone else?

Linda - Do consider what Rosie had to say about your C. being thyroid-related...possibly the hair thinning as well...and maybe even some of the fatigue. Perhaps ask about getting your meds for that adjusted? (I speak from experience...just a thought.)

Hmm...four out of four have had some kind of rashes...don't believe my sister has, but will ask to be sure. Two out of four seem to have had kidney problems to start with (and I think a third who hasn't chimed in yet). Interesting.

Anyone have a clue as to why a doctor would suggest seeing a rheumy for bad muscle cramping???

Sister, A doctor suggested seeing a rhuemy because he/she suspected an autoimmune condition and I doubt that suspicion was based on just one symptom. The doctor probably would not have wanted to share his specualtions with his patient and would rather wait till the rhuemy made the diagnosis. Sj

A rheumatologist IS a lupus/connective tissue disease doctor. He/she usually kind-of "runs the show" and referrs the patient out to other specialists when necessary. Exception being when something like kidney disease presents first and a nephrologist is already in the picture.

You got four answers re: kidney symptoms first . . . but most members here do not have kidney disease. Lots do, of course, but lots don't.

Many members here (including me) do not have definitive lupus dx. Our symptoms are being treated and many have UCTD (undifferentiated connective tissue disease). So you may not here from us who don't really have a lupus dx. Docs often REALLY hesitate to get that word in our medical files (Lupus). It is actually a great favor they do us . . . by treating us w/o giving that final dx. It protects us a bit if try to pick up medical insurance or have a gap between insurance. Many of us do NOT push for a dx as long as we are being treated for our issues.

There is a link at the end of my signature "4 of 11" which will show you the 11 criteria for dxing lupus. If a patient has 4 of the 11 . . . they are thought to have lupus. So you don't need every symptom or any certain 4 . . . just 4 of the 11. Not all of us have rashes either. Not all are sun sensitive (most are).

I hope this helps.

Blessings!

In His Grip

AlwaysRosie "We can't control the waves, but we can learn how to surf!!"

Sandy , Yes I started with the kidneys , high protien , white blood cell count was way out of whack, that was when I was told I had autoamue diease . Was dx with lupus at 26 , I guess I do have an offical dx , but don't really know which one I have had sjogrens couldn't make any tears , haven't had a problem with that since I have been taking plaquenil . I don't have ra do have degenertive disk diease , have UCTD to , Rumey treats me well and I have medical through husbands work so I guess I don't push for or ask for dx. My paper work says somthing different everytime I check out at rumey from UCTD to fibro , lupus so on . It's crazy. Rumey says my cell's attacked the tissue under my left eye , it is really big and swallon, has been that way for years , most of the time I look like I have black eye . for example image someone with bags , well it's two time's that size . Hope this helps . Crystal

Looking back my very first symptom was probably severe diarrhea with no known cause and unexplained skin rashes that appeared and disappeared in a matter of hours. When I started with kidney issues my nephrologist told me immediately he thought I had lupus. I thought he was nuts and never let him pursue it further....until I had so many symptoms show up I knew he was correct. I also have a positive ANA of 1:1280. I was lucky to get a DX so easily, it usually takes years, but my kidney biopsy was pointing strongly toward lupus and it made a big difference.

When muscle cramps were brought up with the rheumy, the first time it just got a blank stare. The second time, the answer was, "I don't do cramps." ?? And that's why I asked why another doctor would suggest seeing a rheumy for that. (Just explaining the full reason for asking here.)

Hi there! I am relatively new to Lupus too so i think everything should be pretty fresh in my mind for the "survey"

1.) my first symptoms probably were fatigue and swollen lymph nodes all over my body. After that, I got a blood clot which was another symptom

2.) I was diagnosed at 19, I am 21 now

3.) After all of the biopsies and testing, I had symptoms for about 6+ months before getting a diagnosis. but I have to say from what I have read about other lupies, I think the medical community is getting better at correctly diagnosing this disease and I am thankful to all of my doctors who took my grievances seriously and finally came up with the correct diagnosis rather than attributing it to being a "hypochondriac" which, sadly, I think many other have been accused of....

4.) in terms of family history, no one else in my family was diagnosed with lupus, although my fraternal grandmother had rheumatoid arthritis and my father passed away from leukemia so there definitely is a history of immune illnesses in my family...

5.) At this point I do not have have any symptoms of arthritis, the only time I have had swelling is when my kidney's shut down from e.coli. at that point I had severe edema and was put on dialysis (but im all better now). I also had swelling when I had blood clots in my legs (I have had 4). Other than that I occasionally feel achy and very tired which I supposed just means that I am flaring, or am about to flare etc.

6.) n/a

7.) I have NO idea how often flare occur but I do know that I has to do with stress and other factors which can "trigger" a flare up. I try to work out and eat healthy so hopefully I can prevent flare up as best as I can. Sometimes there is just nothing you can do though. Also, If I am around someone who is sick I get sick very easily as well because I am so immuno suppressed, I dont really consider it flaring technically but I definitely dont feel my best when I am being attacked by a virus

8.) I dont know if it is because of my meds or what, but I think i do have Irritable Bowel Syndrome with mostly diarrhea...ick. it comes in waves though so sometimes my bowel movements are regular....

9.) I have no idea about my ANA except that I think I texted positive for the double stranded DNA thing...if that makes any sense....im not sure...

I hope this is of use to you and your sister! take care!

*one thing I would like to add: the side effects of some of the lupus medications can sometimes seem worse than the actual disease symptoms!! when I was first diagnosed, I was put on a high dose of prednisone, my face blew up like a balloon and I looked like a chipmunk. I am also on blood thinners so my legs are covered with bruises which is embarrassing in the summer...but at least im alive!!

I forgot to add that i had a lot of protein and blood in my urine too as one of my VERY first symptoms. it was stinky!! i didnt think to mention it to my doctor at first because I thought it would go away on its own..

1. ) What do you think may have been your very first clue(s) that something wasn't right?--

My very first symptoms were very vague and consisted of a general sense of not feeling well. I was very weak, tired and shaky and had some generalized pain that would come and go. I also was experiencing brain fog and an overall feeling of just not feeling like myself. I also felt like I had gotten a case of the flu that I could not get over. Within 6 months of my symptoms starting, I got many other symptoms like mouth sores, hair falling out, rashes, fevers, joint pain and other symptoms I'm sure I'm forgetting.

2.) At what age were you diagnosed?

I was finally diagnosed 2 years ago at age 39, but was sick for almost 3 years before that.

3.) How long did it take to get a diagnosis?

It took about 3 years and 3 rheumies.

4.) Is there a family history...or do you think this may be more of an environmental issue...or neither?

I had an aunt who had lupus. She recently died (in her 50's) from complications of diabetes and lupus. I also have many extended family members who have RA.

5.) For lupus without arthritis: How are the symptoms different? Do you have swelling?

NA

6.) If with arthritis, are cortisone injections helpful? How often?

I have arthritis in my hands and feet but have never gotten cortisone injections.

7.) How often do flares generally occur? Does something seem to set them off...or do they just seem to happen spontaneously?

Before I got an accurate diagnosis and the right combinations of meds, I used to flare a lot. There was a time period of about 6-9 months before my diagnosis that I felt I was in one long continuous flare. Sometimes flares just happen and there was no way to tell that I was going into a flare. Other times I will flare when I overdo it. I have been trying really hard to pace myslef and listen to my body so I will have fewer flares.

8.) Are gastrointestinal problems common (independent of reactions to meds)? Diarrhea? Constipation? Nausea?

I think quite a few of us have GI problems. I have had nausea on and off since I got sick, but lately it has gotten a lot worse and with diarrhea and I recently found out I have UC.

My present diagnosis is Undifferentiated connective tissue disorder and Im awaiting further tests with a specialist on the 17th July to see if it could be lupus which had been queryed and then found negative a whole ten years ago.

1. ) What do you think may have been your very first clue(s) that something wasn't right?-- My very bad reaction to parvovirus ten years ago- all joints swelled, temp very high, delirious, blood tests showed ANA Positive and increased plasma viscosity due to inflammation. Needed steroids to control the swelling and fight the fatigue etc once the joints began to heal.

a. Overall stiffening, such as in the morning or after sitting awhile? Now (Yes - mostly in legs and feet, sometimes lower back and neck area).Initially with that flare I couldnt move at all- my nack comletely seized - pushed out disc and I just was so swollen and sore.

b. Random pain in muscles/joints (moving around in a variety of places)? Now (Definiely yes - always aching somewhere! and it moves every five or six days. I occasionally get a day in between the next place starting up but its rare!) Everything ached in that initial flare but it did go away - now ten years later it never completely goes but isnt at that intense flare level.

c. Localized pain (pretty much the same place all the time)? Now (Knees always bad to different degrees and thumb joints too. Recently lasy six weeks or so the heel area under foot always aches to diferent degrees though day to day). Initially my neck joints - and I could feel the inflammation jumping from one vertebrea to another - it felt like a red hot poker working its way down your spine.

e. Depleted energy? ( Now -; Absolutley! very rarelay get a day where I feel energetic, can fall asleep walking if I just let it happen Im sure!)Initially I was exhausted with that flare but my energy did recover- now it never feels quite right.

f. Unexplained weight loss...before having chronic pain, nausea, etc.? Nope- but I have hypothyroid which has fought against weight loss and in fact brought about considerable weight gain in last five years. Only diagnosed with this two months ago - now losing weight but I am trying.

Anything else?? Remember...we're asking about very early on.

2.) At what age were you diagnosed? started at 28 - only very recently diagnosed with UTCD (39)- still waiting for lupus tests again.

3.) How long did it take to get a diagnosis? see above .

4.) Is there a family history...or do you think this may be more of an environmental issue...or neither? I dont think so on mums side and I dont know my dad so thats real hard to know. Certainly the parvovirus did not help!

5.) For lupus without arthritis: How are the symptoms different? Do you have swelling? I have the pain in my joints without any serious sweling or damage being done from what I can tell and GP says. The pain is bad but it jumps from one area to another - and doesnt look red swollen etc - apart frm neck joints when that flares it does look red, swollen and hot. Once this goes away though there is no sign of long term damage visually or n Xrays done ten years ago - but it was ten years ago.

6.) If with arthritis, are cortisone injections helpful? How often?

7.) How often do flares generally occur? Does something seem to set them off...or do they just seem to happen spontaneously?Initially two to four times a year- now seems less often but I have more ongoing syptoms and damage in between.

In my case, viruses and diseases (in my case TB) may cause the ANA to elevate and silently destroy your body because the antibiotic therapy did clear them all the way or you werent tested and properly dxed. Has your sister had a TB and hepatitis test and other infectious disease tests and does she test positive for anti-ds-dna or other autoantibodies? Even that might not be definitive. I test positive for p-ANCA, which can be from lupus, but also can be from TB, and have low titers for sjogrens and lupus autoantibodies and anti-LKM1, but was told they can be from other diseases, esp. in my case. I can send you links to articles about this stuff if you like. This is good news because if treated properly and persistently, some damage may go away. For me steroids could make the TB active and I could spread it, but my endo is so messed up now that they have to do something so eventually I can get them. Many many many diseases now are antibiotic resistance or antiviral resistant, so you need to go to an infectious disease specialist who will really treat you persistently with multiple drugs if necessary or in my case, even surgery, until you are really truly cleared. I learned this the hard way.

I would make sure that she gets really good imaging done. For me, Mayo tells more from an xray than others with an MRI. It matters where you go and who looks at them. Since you have no lupus in your family (and neither do I). for years I was told my mris were neg. I recommend a myelogram if she has spinal issues. I'm going to get a spinal tap now, wish it was done during my myelogram, don't know if they can.

2-3 43 years old, don't know because I don't know how long I've had it. Had pneumonia three times in first year of life. Always sick, may have always had it, may be a misdiagnosis and I have something else. Still not firm.My ANA is always high and speckled.

5. Tendonitis in shoulder recently, gone mysteriously. Knees hurt bad, sometimes one, then the other sometimes both, often on waking, even feel hot sometimes. No damage. Random numbness or proneness to it if I lean down on my elbows or in wrists. Stiffening of the hands and fingers, hard patches, muscle stiffness that doesn't go away. Sudden aches and pains.

6. Yes, cortisone helps my osteoarthritis tremendously. A good injection by a skilled doc in my sacroiliac joint fixed my sacroileitis for almost ten years. That's a very unusually good response I think, but it helps alot when done right.

7. getting sick with a cold, going out in the sun, not eating right, overexertion, mostly no reason that I know.8. all mentioned and more9. High always for fifteen years when tested, speckled, positive p-ANCA--no additional infoLove, Marji

--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"

Please remember that this is not a scientific survey and any "trends" you think you see here are highly suspect and not at all representative of the entire range of lupus patients.

- People who cannot afford or don't want to or are too sick to use computers won't be here. - Those who haven't found this website among the millions available won't be here. - Of the 2000-3000 who *have* visited this website and the lupus forum, - only 14 or so have had the time, energy or desire to respond to you.

The scientifically controlled studies by doctors and researchers and whose results are indicated on official web sites, such as www.lupus.org give you much more precise information than informal happenstance results from such a small, limited sample here at HW.

One lupus book that has been highly recommended by doctors and patients for years and has more information like you are looking for is: The Lupus Book, by Daniel Wallace, MD.

Thanks AlwaysRosie and Sister for the advice but I have my thyroid meds. checked every 4 months and I do the fiber everyday. I know the problem is the Loratab I take for my back and joint pain when needed that causes it so I try not to take it if I can help it.Lupus, RA, OA, Raynard diseases, Hypothyroidism and a Breast cancer survior.

I think all the different experiences shared here have been really interesting. And, geez, I hope no one seriously thought there was the least thing 'scientific' about it...and which is why I added a facetious "sort of" to the topic. Just a way to cover several aspects in a, more or less, organized way. There's no doubt about this being very complicated--and maybe for that very reason I think the many different ways this has presented/manifested for everyone has probably been the most intrigueing--and confounding--of all. My sister's began with a strange twinge of some kind in an ankle bone at the end of last year. That soon became very painful and swollen...and things progressed (in all the wrong ways) from there.

She finally got some decent pain relief with the cortisone injections last week, but then had some really bad nausea for a few days which I believe she felt was mostly due to meds...but, again, this is hard to know for sure. It's worse than a shame that there so often seems to be some kind of trade-off like that (Linda and her Loratab comes to mind, MissCali and her prednisone, etc. ).

Lynnwood, I read the interview with Dr. Wallace and appreciate you directing me to that. I have passed along the link to my sister and hope she can maybe check out the book sometime in the near future. Sounds like a good recommendation for everyone.

If anyone feels like they learned anything, or even just thought this was a good way to commiserate, I'd like to know 'cause now I feel kinda bad for even alluding to it being any kind of "survey" at all.

Don't feel bad Sister. All newbies (and the rest of us) are anxious to size up their disease. The mods just need to caution other folks reading here that the results of any questions here are very skewed. Certain words in the posts will draw lots of "Google" traffic and these are people who read and never become members and they assume that the answers here are more scientific.

We sometimes warn newbies that a lot of the members here are the 'sicker' ones, seeking relief and answers to some hard questions. Lots of folks with Lupus, get their dx, treatment plan and live happily ever after.

Enjoy the forum and please don't feel bad . . . its just some careful words that need to be inserted here and there to make sure folks don't misunderstand.

Blessings!

In His Grip

AlwaysRosie "We can't control the waves, but we can learn how to surf!!"